Husband Diagnosed 12/06/2016

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Comments

  • Positiveme
    Positiveme Member Posts: 10
    edited March 2017 #22
    Johns Wife said:

    We go next week to discuss

    We go next week to discuss clinical trials

    same as my dad

    My dad also has HCC, and now joined clinical trial 

    Clinical Trial : CRCL-AlloStim™ is a personalized, anti-tumor, therapeutic vaccine made from a sample of a patient's own tumor. 

    You can check and google for more detial. this is specialized for HCC patient. but the patient needs to take nexavar for three months before joining the program.

    Good luck and be strong. Last time doctor also told my dad 6 months but we just focused step by step. So stay positive and boost up his immune with good food and happy environment. 

  • Johns Wife
    Johns Wife Member Posts: 14
    edited June 2017 #23
    Fortie said:

    Johns wife, how is your

    Johns wife, how is your husband doing on the Nexavar? My husband has been waiting since november to get into a clinical trial at Georgetown. His last lab showed his liver function has started declining so the oncologist decided to put him on Nexavar. He ended up in the ICU on his first day of taking it. He is still at the hospital with breathing difficulty and edema in both legs. They doubt the Nexavar caused it so they are restarting him on a lower dose. I am beside myself with worry.

    So far so good!

    Just a quick update...My husband has been on the Nexavar for 5 months now, technically, his 6 months they gave him was up last month!  He has done well on it, very little nausea, or weight loss, no skin issues. He does have a poor sleep pattern now and is exhausted most of the time though.  His AFP has continued to decrease as well. He started with it at about 56, it came down to as low as 18, but currently is back up 24. The last CT showed no growth of the tumor, he has a repeat scan in 2 weeks.

  • Johns Wife
    Johns Wife Member Posts: 14
    #24
    Positiveme said:

    same as my dad

    My dad also has HCC, and now joined clinical trial 

    Clinical Trial : CRCL-AlloStim™ is a personalized, anti-tumor, therapeutic vaccine made from a sample of a patient's own tumor. 

    You can check and google for more detial. this is specialized for HCC patient. but the patient needs to take nexavar for three months before joining the program.

    Good luck and be strong. Last time doctor also told my dad 6 months but we just focused step by step. So stay positive and boost up his immune with good food and happy environment. 

    Where

    Where is this procedure available at, or where is your Dad receiving it from?

  • Positiveme
    Positiveme Member Posts: 10
    edited July 2017 #25
    Johns Wife said:

    Where

    Where is this procedure available at, or where is your Dad receiving it from?

    check out http://immunocare.net/

    the program that my father joined the immune therapy program has completed for now. the project is done in Bangkok, Thailand with cancer national research & dr. mike from USA. you can check out http://immunocare.net/ for any other clinical trial they might have or research for immune therapy program nearby your area. now my dad did ANTI PD1 injection every two weeks, and stop nexavar  but using the other medicine  LenVIMA instead. most importantly, try to build the immune by taking protien shake if no appettie , taking  vegatable& fruit juice fresh ( pineapple is great with good enzyme) and good mood. watch a lot of funny clip to make the body release endorphine hormone. just share from what my dad did during the experience. :)

  • Mike5072
    Mike5072 Member Posts: 12
    #26
    Johns Wife said:

    So far so good!

    Just a quick update...My husband has been on the Nexavar for 5 months now, technically, his 6 months they gave him was up last month!  He has done well on it, very little nausea, or weight loss, no skin issues. He does have a poor sleep pattern now and is exhausted most of the time though.  His AFP has continued to decrease as well. He started with it at about 56, it came down to as low as 18, but currently is back up 24. The last CT showed no growth of the tumor, he has a repeat scan in 2 weeks.

    Opdivo for HCC

    I have begun a 12 session regiment of Opdivo as I could not tolerate nexavar well and it was proving to be ineffective.  Ask you doc about Opdivo, it has been showing good results and is well tolerated.

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